Patient-reported outcomes can be effective tools to improve patient outcomes. As an intervention, the usefulness of PRO data is mediated via feedback mechanisms that are designed to inform care providers and inspire action. I argue that PRO feedback, as well as the systems that are designed to administer PROs, can be designed to engage participation as well as to inform. The benefits of an engaging system may include increased acceptability as well as a greater propensity to share data over the course of a person's healthcare journey.
Resources below are designed to help leaders of PRO initiatives develop thoughtful PRO assessment and feedback systems that create actionable insights and are valued by patients as useful sources of information about their health.
Thought processes for determining PRO system design
I recommend that you break your thinking down to answer three key questions:
Who is looking at the feedback
What are their information needs or desires
How will they use the information system
What am I able to engineer/access/implement?
Before you consider how to design your feedback system you need to be aware of any limitations that are imposed by your current PRO provider. Many PRO systems are not capable of producing the sort of engaging user experience that we would expect from most mobile applications.
What would I like to do?
Separate to your considerations of what you are able to do you should consider what you would like to do. Identifying all the elements that would make your PRO system optimal will allow you to prioritise and potentially assist with partnering with the correct provider.
What does my feedback/system need to achieve?
Understanding what you'd like to achieve is a crucial step. I'd encourage you to be ambitious and imagine an ideal situation (ignoring restrictions that you encountered while considering "what am I able to do?").
Who is the feedback for?
Understanding your target audience is crucial to developing PRO systems that will resonate with patients. This can be done through a series of thought experiments or as part of a more structured investigation, perhaps guided by the principles of value-sensitive design.
How will they use the assessment system?
PROs can be completed in multiple ways at different times. Considering the ways in which the system will be accessed, which may include what device is being used, what time of day responses are being given, how feedback will be delivered, how clinical teams will make sense of the information, will users return to the system- do they need a log in?
Further information will be added shortly. Please contract me if you have any specific questions.